Category

Symptoms and Side Effects

Sometimes Crohn’s will ‘spin off’ into other interesting issues. Be it prescription side effects or weight loss or Meniere’s. Life is always interesting when dealing with these variables as they encroach on your world. Lets talk about how I deal with them!

Ringing in the Summer

So I’ve been a bit a lot distant. And you haven’t heard very much from me. Truth is it’s been crickets over here all summer while I’ve been quite busy managing unexpected health Blarg!

It’s no secret I have Crohn’s Disease, an Ostomy and I’ve even mentioned my Asthma. But then there’s that other health thing I balance and pretty much never talk about. In part because it’s been relatively stable and because it’s not fully IBD or Ostomy related. To get straight to the point, I have Meniere’s Disease. (Like I really need another thing. Right?) I’ve been diagnosed for about five years but have dealt with symptoms since my mid twenties. Up until recently it’s been a thing that’s kept me off boats, festival rides and makes me woozy on airplanes, elevators, bridges, docks and most buildings two floors and higher. Every so often the tinnitus would act up or I’d get dizzy easier than normal. But it was manageable and largely not a big deal. The Meniere’s diet is a low sodium one which is opposite of Ileostomy diet. So I figured they balance each other out? As long as I was feeling well I didn’t worry about any of it.

Meniere’s (by my own non-science description) is the sensation of often painful fullness and pressure in the ears, tinnitus which is ringing, thumping, whirs, waves and that loud sound when a microphone has feedback problems.  I’ve experienced short periods of time where my hearing blanks out in one and sometimes both ears and I hear nothing at all. Silence. I struggle to hear in crowds, meetings and classes where there is background noise.  When my ears are flaring, understanding the people I love most is the job of mentally wading through the noise to focus intently on the sweet voices that are being distorted and pulled apart by a chaos of sound that only I receive.

It’s easy to sneak up on me. An unfair result to my family is that I am easily startled when they enter the room. I have no idea they’re headed my way. I’ve lost the sound of their footsteps.

The quiet things that fill in the tiny parts of a joyful life ~ like the sound of my husband breathing as he sleeps, birds as I sip coffee on the back paddock in the morning and neighbors approaching up the street as I play with my plants in the front yard have all been given an annoying auditory addition that sometimes blots the sweet quiet things away.

Tinnitus keeps me awake at night. At times the noise is maddening. I get irritated and smothered by it. It is sometimes emotionally difficult aka sometimes I privately cry, wipe those damned tears away and get back to it. I stay busy and cushion myself with the sound of my children to drown it out. I’d much rather hear them than a high pitched EEEeeeeeeEEEEeeeeee any day. Closed Caption and TV volume turned up high is how I understand a movie without bothering the husband or child next to me with “Huh? What did she or he say?” I’ve recently decided to stop asking and ruining their show. Conversations in the car are trickier. I keep reaching to turn the radio dial up to increase the volume of my children’s voices. (I wish that were a real thing.) Instead letting my hand go back to the steering wheel and ask them to repeat louder for Mama…again.

Hold up! Did I just agree to ice cream for dinner?
Hold up! Did I just agree to ice cream for dinner?

Meniere’s is more than hearing. It’s severe vertigo. Shortly after moving to our new house, without warning I was sea sick on dry land. My head was caught up in a storm and my compass was tossed. I could feel my eyes involuntarily twitching in my head trying to find solid and unable to recognize it. I clung to my bed sweaty and desperate. I climbed on fours into the shower and laid on the cool surface for relief and a safe place to vomit. Thank God for Crohn’s Disease and a forward thinking prescription for nausea meds that melt on the tongue or I would have been desperately dehydrated. My body wanted to void more than it actually did and my output was a violent spouting of liquid in the Ileostomy bag. I could not eat or drink. I was a human Exit. When all was gone I was a naked, ratty haired carcass capable of breathing and gag reflex. I was worried for my stoma herniating. I was concerned about fluid loss. I was afraid of how much worse this would get if I had to go to the hospital. The ride alone…. In that place I could not imagine it. After two and a half days with no North I was left limp and used up. Slowly over the next few days the vertigo passed and I was able to carefully navigate around.  I’ve not made it back to the care free normal I was before this latest tossup.

Turning my head too fast, some movies and TV shows, walking in a dark room without touching walls or surfaces for reference and even closing eyes while rinsing hair in the shower sets my head in a mini spin. I am clumsier than normal and I have even stumbled and fallen once because of it. I live in brain fog and vomit more than an Ileostomate should. The energy it takes to understand those around me, navigate the world and do well in it creates a fatigue that we as IBDers understand. I just feel as though I am carrying enough for two right now.  Sometimes all I can do is lay in a cool dark room and breathe until it passes.

In case you were wondering, when it comes to Meniere’s Disease there is little funding or understanding of the cause. There is no cure and treatments are life limiting.

I am receiving care. I take meds for vertigo and nausea which so far are sedating and largely ineffective. I am hopeful for the most recent med and would love to report in a few weeks that it works.  We shall see what time will tell.  But as IBDers, we understand that patience through the process of discovering the right med is part of the twisting road to finding the very best fit. I feel lucky to have doctors that are working the problem. Before this is done I imagine more experts will be welcomed to the team.

All this adds up to me taking it easier. I’m not participating in all the fun things I would rather be doing on a fine summer with my little family. And frankly, I haven’t shared with you because I’m not so jazzed about this turn of events. It’s still a work in progress to find reasonable relief.

No happy ending yet.

But there’s gratefulness for a supportive husband, helpful children and invested doctors.
And hope.

Much love to all of you my Sweet Bolognas <3

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

20141228_164218
Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.

 

Boo!

Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Gallbladder Surgery

The last couple of days I’ve been busy with surgery pre prep. This includes doing things like packing my hospital bag (Packing Video)

Prepping a week of outfits for my children.

Clothes for the week for the kiddos.
Clothes for the week for my kiddos. The littles wake up and put the clothes on their sleepy little bodies. Less morning stress for everyone = Win!

Thinking ahead about little lunches to pack.

Fruit cups to make lunches and snacks for the week a snap.
Fruit cups to make lunches and snacks for the week a snap.

And in the past I have even done this.

Food to eat while I'm away?  Check!
Food to eat while I’m away? Check!

And tidying my bathroom and closet/dresser. (Which happens to be nervous cleaning with the benefit of coming home to a clutter free, stress free environment.) And just making sure everything is set to go smoothly while I am away for a couple days.  Aka paying just arrived bills, make sure my volunteer time at the school is covered, make sure drop off and pick up times are written down for my hubby, practice speech with the little guy so it’s easier for when he practices with his Daddy, etc etc.
You get the drift.

The surgery that I am having is a gallbladder removal. My gallbladder has been a quiet offender for the last nine years.  It was hiding as mysterious pain that I passed off as overexerting myself or being a weekend warrior and unexplained increased liver levels resulting in unfavorably high numbers that over time magically resolved.  What finally helped us put it together was this last December I passed a gallstone which landed me in the ER. Yow, that was exciting!

Gallstone ER visit.
Gallstone ER visit.

So the deal with gallbladders is they help aid digestion by storing bile created by the liver, then releasing that bile, aka gall, into the digestive tract which helps break down and emulsify fats to help digest your food. Yay!

However, when your gallbladder gets cranky and inflamed or maybe tossing stones, is when things start going sideways. Stones can back up into the liver causing liver issues, which is something I am dealing with. And sometimes stones can back up into the pancreas and cause issues there as well. Also, as in my case, once stones start moving through, a bunch get together and decide to work their way out which is painful as can be. So that’s why I’m going in.

Much of the time gallbladders can be removed laparoscopically. Which sounds terrific. There’s less down time and a smaller incision. Very good things. But, if you’re like me, and you’ve had a couple too many abdominal surgeries, there is a higher opportunity for scar tissue which makes the laparoscoping (<—-Yes, I made that word up) harder than it has to be. In essence, it makes the surgeons job tricky in that scar tissue creates an obscured environment for her/him to see and maneuver to do the job.

So I’m having a standard incision below the ribs right above the gallbladder. This will make a straight shot in for surgeon to clearly see the offending area and do his/her job.

Laparoscopic versus open procedure.
Laparoscopic versus open procedure.  Photo credit: Surgeryinfo.org

This plan of action is good for a couple of reasons.

1) Scar tissue is a beast and I am Fantastic at growing scar tissue. I’ve even had surgery in the past to remove scar tissue. So I’m pretty sure there’s a bunch in there. I don’t want my surgeon to go in laparoscopically and then have to turn around and require standard entry. *Zero hitches in the plan!*

2) If the ducts that lead to the liver and pancreas need to be flushed, Voila!, there’s plenty of room to do that.

3) Another scar to rock on the beach! No, not really. But yes, really. For the damage this little gallbladder time bomb is turning out to be, removing it will be worth the battle scar. And let’s be real. I play organ favorites. I just like my liver and pancreas WAY more than a sputtering, malfunctioning gallbladder. So there!

4) The bile produced by the liver to aid in digestion will still happen. Instead of going through the gallbladder, it will empty into the small bowel to begin its digestive aiding job there. (Whew! Thank goodness I still have that part.) If I had a colon still, I may experience looser stools. As an Ileostomate, this is already the case, so less of an issue for me.  Score for being an Ileostomate!

Things I am going to keep in mind moving forward is diet. I am already an infrequent fatty food enjoyer. That’s one point for me. Plus we officially live 1000 miles away from my very favorite corn dog stand located in Otis Oregon. So in that regard I’m safe. But it’s those festival, Oktoberfest, onion ring, occasional joyful moments that I will have to be more mindful of. *Gasp! * Don’t forget ~ SUPERBOWL!! Well, it must be time to perfect those boneless hot wings. <—-See? I love food. And I will continue to do so thoughtfully.

In the end I am grateful that I am not having a bowel surgery. For ONCE I’m not going in for IBD. I am grateful that being an Ostomate is actually sort of helpful in this case. I am grateful that the surgeon doing my procedure is also top notch in Ostomates of all sorts. (Which is a BIG deal to me.) I look forward to improved liver function and no more painful stones passing. I am glad to be having this done at a time when the rest of my world is relatively calm. I am super grateful that my husband is able to take time away from work to care for our children.

Most of all I look forward to getting back to regular life. I have plans in action that I want to see through and a life that needs living with me at my best.

Junk Food Does NOT Cause IBD.

Junk food does NOT cause IBD.
Junk food does NOT cause IBD.

Landslide of diet questions lately.

Please let me clarify something. We -my family and I- eat a Gluten, Dairy, Soy, Casein, Food Dye Free diet for our child. Out of respect for him, when in his presence we eat the same foods that he does. Because I am a stay at home mom, this is most of my day. However, when I go grocery shopping by myself, I occasionally indulge at the local Greek shop and enjoy baklava or gyros…or both!

I do not live this diet because of IBD or my Ostomy at all. If there are any positive results, I attribute them to a whole body care idea of Gastroenterology, meds, and general healthy lifestyle, including diet, exercise and joyful pursuits.

With all that I still have flares, am very careful to eat according to my bodies needs that day, always mindful towards hydration, proper rest and fatigue levels.

I know many people who have changed their diets with amazing results. This is hopeful and inspiring. However, that outcome isn’t universal.

As for junk food? I strongly disagree with the crazy notion that junk food is THE cause of IBD. As a person who sat across from more than one well intentioned aka passive aggressive person who suggests you just ‘buck up’. It’s all in your mind. Exercise more! Have you tried X.Y.Z. supplement, diet, therapy, ‘cure’, method, spiritual cleanse? How about various detox, wearing special rocks with healing powers, massage, acupressure, acupuncture, medications, creams, ointments, oils from such and such country? Just eat more. You need a milkshake, you need a hamburger, how about adding mayonnaise to your food? I’m taking you in so this herbalist can look into your eye and ‘map’ your problems then suggest the right combo of herbs. Chlorophyll. Raw diet. And the list goes on.  Junk food is just one more way to calculate cause and blame for a disease we are still learning about.

It all adds up to the idea that the cure is in the hand of the afflicted if only you believe and try hard enough. As if our own actions, or lack there of, caused this disease that every day tries to kill us. It’s a ‘Results vary by effort put in.’ thought process that exonerates those around us from guilt. They can’t feel bad if being sick is our fault. Our choice mirrored out by our actions. Junk food represents the IBD that we willingly consume, making disease our fault.

As for a cause of IBD? I’m putting my money on good ol DNA.  Could something be a trigger?  Yes.  Environment, diet, stress, general health, exercise/ activity level, pollution, and so much more more.  As a whole, we just don’t know.  And that’s the point.

Suggesting that junk food, or any food, is THE cause of IBD is shifting energy from finding a cure, towards villainizing foods and blaming the patient as the cause of their own suffering.

Blaming, shaming, presumptuous, incorrect words passed off as fact is dangerous, isolating and unintelligent.  It serves to purposefully unload responsibility of discovery and cure onto the shoulders of sufferers and their families to navigate alone.

Taxes and Crohn’s Disease

Taxes, Crohn’s Disease and Medical Expenses.



The one time a year we sit down and discover exactly how much of our income we spent on medical.

This year 21.7% (including pre tax dollars) went to paying insurance premiums and medical bills. 11.7% of this was post tax. Aka c
ame directly out of our paycheck.

I don’t go around feeling disabled. Pretty much never. However, this cost is very disabling to our family.

And stressful.  Here’s a link to a previous post where I go over money stress as a mom with Crohn’s Disease.

Here’s to ZERO extracurricular medical activity in 2014!

Now for a list of things I am grateful for about all this: (Because that’s how I roll.)
~Taxes is a time to be grateful that my husband has a job he loves.
~Grateful for my awesome filing and record keeping skills.
~Grateful that I have a husband willing to do the taxes while I make yummy stuff in the kitchen.
~Sense of accomplishment and relief when it’s all done.

CROHN’S DISEASE FLARE ~ TELLING THE TRUTH & PHOTO REALNESS

This is what a Crohn’s Disease flare looks like.

Sara of Inflamed & Untamed – Crohn’s/Colitis Support latest blog post made me realize a truth about Facebook and other social media in a whole new light. We are all putting our best foot forward. We seem to share the best pics of super happy times. Which is great. We all want to share our joys with those we love. But we aren’t always honest. Some think of this as ‘airing your dirty laundry for all to see’. Sure, I get that. I am guilty of this as well.

But it is sending an inaccurate message of what Crohn’s Disease and Ulcerative Colitis really is. Of course people think IBD is just a ‘pooping disease’ when there are very few accurately labeled images of what dehydration, blood loss, and exhaustion looks like.

People are very visual. We respond emotionally to what we see. So when the written word describes the horrors of Crohn’s Disease and the picture is of a beautiful, happy looking person, there is a disconnect. Understandably so.

In an effort to remedy this and make the image match the truth I will be more open with my less than flattering ‘Sick Pics’. Perhaps I will start a trend? You are welcome to join me.

Let’s not just tell what Crohn’s Disease and Ulcerative Colitis are. Let’s show it.

This is me during a Crohn’s Disease flare. Not too sexy huh? Not feeling all that hot either. This is what dehydration and blood loss, sleepless nights, abdominal cramps, exhaustion and pushing hard every day to be a normal wife and mom as hard as I can looks like. And pain. Real pain. And guilt because I hated the Crohn’s Disease that lived in me and was actively robbing the energy that was meant for my husband and children. I was walking around pretending to be ‘normal’. You know what else? Not one person said a word. Which adds a touch of isolation to it all. At the time all I could focus on was getting through the day. Caring for my family was all that mattered. One gift that I thank Crohn’s Disease for: Makes your priorities and what is really important crystal clear. I was hospitalized shortly after.

Thank you Sara for inspiring truth telling. Because the picture really does need to reflect the message.

IBD Soldier, Survivor, Victor

Last years big flare.
This is what Crohn’s Disease looks like when it gets too big.

Frequently I see signs saying ‘IBD Survivor’.  I suppose this feels true for so many.  But lately it hasn’t for me.   I challenge you to think of it as only half the story.  Surviving means you lived through something, overcame it, and emerged on the other side a victor.  And while we have all gone through invasive probing, painful tests, hospital stays, surgery, more surgery and hand fulls of pills every day, we have not won victory over anything but our ability to tolerate pain in effort to be well.  We don’t get to claim outright victory until IBD is CURED.  Until that day, we are all Soldiers.  Every one of us.

The surgeries, scars, ostomies and brushes with death that we experience are only skirmishes in a lifelong battle.  That does not negate the importance of surviving each conflict with IBD.  They are real victories.  We battle to survive.  However, so many people, me included, get caught up in a place of ‘feeling better’ and lose track of the big fight.  It’s like standing in a room with a murderer and not doing anything about it because he is not murdering you that minute.  We are so happy to have ‘survived’ that we slow down our fighting and forget that our job is to be soldiers until IBD is gone forever.

 IBD is sometimes loud, blatant and actively assaulting you. Other times IBD is quiet, sneaky and attacking you in more subtle ways. The slow formation of fistulas, the eventual ineffectiveness of IBD medication, the malabsorption of nutrition that slowly steals vital nutrients from your body, weakening your bones and wasting you away. Even secondary diseases such as liver failure are all favorites of IBD. IBD does not care about you, your plans, or your well being. It has one goal and it doesn’t care how it wins. Whether dismantling you violently or taking you softly, It Will Not Stop.

Until we find a complete cure, Inflammatory Bowel Disease will continue.

IBD needs to be cured for us, so we can continue on with full lives, but also for our children.  I will have really won when my grandchildren have to Google IBD to know what it is.

I try to be just like my loud and zesty Great Aunt.  She had Polio when she was a small child.  Before the vaccine.  She lost the use of her arm and it hung from her body as a lifeless but very real reminder of a disease that was once uncontrolled and quite deadly.  My Great Aunt was elegant, intelligent and happy.  She never spoke about Polio but she was a strong supporter of the vaccine that prevents it.  For her age and her time I consider her extraordinary.  She was a soldier.  And with Polio, even though she was left with a physical reminder, she was a survivor and a victor.

One day, hopefully soon, IBD will be in the same category as Polio.  Entirely manageable or preventable.  Better yet, eradicated.  On that day I will proudly say I am a survivor and victor as well.

The first week of December is IBD Awareness week.  I encourage you to educate others about IBD and be active in your IBD community on line and in your everyday lives.  Through sharing and living with courage, compassion and joy towards one another we can spread the word, support science and find a cure.

Until then continue to soldier on.

There is no ‘Secret’

I have been told, ‘You look healthy, ‘You don’t look sick’ or ‘You seem to have plenty of energy’.  Whats your secret?

Guess what?

There is no secret.

Not one.

You just have to keep trying.

I am lucky.  I have kids that depend on me.  If I don’t pull it together; their lives become uncertain.  When my children’s lives are uncertain, I become grumpy.  Their well being is more important than giving in to that hollowed out feeling that Crohn’s offers me.  So when I don’t feel well, too tired, exhausted, drained, and considering just laying in bed all morning, I have the great fortune of having two lovely sets of sweet brown eyes loving me, needing me to play my role.

And so I get up, dress up, and go on with my day.

I get lost in the small joys of tying little shoes and walking my kiddos to school.  The hot delightfulness of my morning coffee in the travel mug as my wee ones skip ahead.  The fact that I can shine through small talk with parents at the drop off, and head back home with my youngest to have a day of home-schooled preschool and trains.

Before long I have made it through my day and I can rest happy, knowing that I did it again.

Guess what else?  You Can Too.

Keep fighting, trying, pushing and giving.  Because you are strong enough, your family needs you, and in the end, it is worth it.  

An Amazing Gastro Day

You wouldn’t think going in for a scope would be a pivotal moment in a super amazing day.  But it was.  And here is how it all happened.

My Gastro appointment went well today.  And by well I mean outstanding!!  I had done the fasting regime and was ready to go!  I chose to have my scope with no sedation as I prefer it this way and have gone ‘all natural’ before.  It went perfectly.  The nurse told me I am the first person to have a scope done at their clinic without sedation which I found interesting.  Hopefully I will start a trend? 

From the very beginning everything looked great.  Smooth pink walls, not a polyp or irritation to be seen.  We were able to get quite a ways in and it was one turn after another of great looking bowel.  While we were in there looking around my Gastro took some samples to ensure there was no inflammation on a cellular level.  That was fine by me as it would be a shame to get all the way in there and not take a sample.  I love medicine, science, learning how to live better, and making the most of the situation you are in.  So it all worked out great!  PS. He has an awesome flat panel wide screen to see all the pretty bowel in full color.

In the end I got to lengthen the times between GI appointments to six month intervals and reduce the frequency of two of my blood tests from every three months to every six months.  In addition, I now take one less medication!  *Angels singing* 

This is huge news as I take two immunosuppressants that are hard on the liver.  Only needing to take one means (hopefully) less colds etc., side effects of the drugs, faster healing time from cuts and bruising, less chance of infection from any little cut, and less stress on my liver.

After all this great news my Gastro invites me to join his team for the San Diego Take Steps for Crohn’s and Colitis walk.  Heck yes!  My Gastro doctor works in the clinic, participates in research, is up to date with the most current health information, treats me like the intelligent patient I am, and he let me go under his scope without drugs.  I most certainly want to be on his team.  I will be jogging with him this spring!

After all this awesomeness I go to the lab to pull blood for tests.  I am in and out in fifteen minutes!  It was amazing!!  That alone would have made my day. 

And if that was not enough, I call my husband (who sweetly took time off work to watch our munchkins so I could get this awesome scope done) to come pick me up as they were hanging at the local mall.  Once I open the door to hop in, a waft of curry welcomes me and invites me to sit on down and eat luscious Indian Food!  Oh Curry I love you so!  

So that was my super awesome, magnificent, unicorn and rainbows real life story of how nifty my day was.

Sharing the goodness.  I just happen to have a lot today.

Crohn’s Guilt ~Finances- The Deep End

 

Money, finances, the cost of living with Crohn’s, and how to balance it all is a tricky subject.  People in general don’t like talking about money.  As a culture we don’t openly discuss budgets or debt.  In some circles it is considered taboo and even rude to share honestly about our actual individual economic circumstances. 

As an adult with Crohn’s I will tell you that financial guilt is a large component of the entire picture.  As a wife and mother with Crohn’s, guilt weighs heavier because I see in a thousand tiny ways how my disease is robbing from my families’ bank account.

‘This is the part where I feel guilty and horrid for costing so much $$.  A self loathing of the part of me that has Crohn’s.  A knowledge that if I didn’t get sick so damned often we could go on vacations and have a better standard of living.  I am feeling pretty shitty and worthless right now.’

This is part of a real conversation I had with my husband as the bills from my latest hospital stay start to roll in.  The current one is for $23,271.30.  I still have the Urgent Care bill, Radiology, Lab, and the After Care bill on the way.  Thank goodness we have health insurance.  In the early days of our marriage we did not. 

As my dearest calmly and reasonably tries to calculate whether we spent over 7% of our annual income on medical expenses, yet again, to perhaps qualify for a possible tax break; I think back to similar conversations.  All versions on the same theme we have had for the past sixteen plus years.  I have lost count of the tens of thousands of dollars our little family has spent on Crohn’s Disease. 

We are a one income family.  I am a stay at home mom to two children, who are our priority.  When I am healthy we live comfortably.  We all know that budgeting is important.  But budgeting around the ambushing nature of Crohn’s sometimes feels impossible.  And that is where the guilt comes in.

During the hard times we have scrimped, ate less, worn sweaters to reduce the cost of using heat, and just gone without.  I have learned to make most everything we need, and became crafty by necessity.  Being thought of as frugal is a badge of honor.  My husband and I have skipped birthday, anniversary and holiday gifts to each other.  I cut my families hair and I have gone ‘all natural’ avoiding the salon for myself until on the brink of jungle fever.   ‘New clothing for Mom’ is not an ongoing line in our budget.  I replace items stained, shrunk or destroyed by motherhood.    

Sure, I didn’t pick to have Crohn’s.  None the less, I am the one who is always sick.  It is truthful to say our financial hardships are because of the Crohn’s that lives in me. 

Because of the immune suppressing Crohn’s medication, I am the one with the body that can’t fight off every cold and flu that comes down the pipe.  Yet another way my body continues to be a wrecking ball for our families’ finances.  One of its worst aspects is the unpredictability of it all.     

The stress of that knowledge weighs heavily on me.  I love my children.  I go the extra mile and use my crafty skills to ensure they are never without.  They are well cared for and participate in sports and play groups.  They are happy, social little people.  My husband and I have taught our children to appreciate the small things.  A picnic at the park, scooters in the back yard, walking at the zoo, trips to the beach, and gardening are all activities we enjoy as a family.  We are in permanent stay-cation mode.

I am resentful of my own body because our family spends its money on Crohn’s versus family adventure.  It is hard when our daughter comes home from school and asks why we have not been to Disney Land if her friends and class mates have.  It is impossible to put a vacation goal on the map for eighteen months from now and know we can afford it at the time. One night in the hospital or even an emergency room visit wipes that entire vacation budget away. With Crohn’s there is no such thing as ‘fun money’.  We spend our hard earned dough on just the basics and save the rest. 

When I am at the deep end of Crohn’s loathing, I feel bad for my husband.  When I am sick and bleeding money faster than he can make it, I don’t know how my sweet spouse can stay so calm.  During those times I feel helpless to make it better.  I wish I was strong enough to make Crohn’s disappear forever.  There are times when I privately cry with fiery anguish at my hatred for Crohn’s in that moment, and sorrow for its injustice towards my husband.  My wonderful man deserves a wife that is healthy all of the time.  He deserves to share his life with a woman who is not so acquainted with the inner workings of her own guts and hospital procedure.  Guilt whispers cruel intentions into my brain during woe filled times. I feel the need to be especially kind to make up for the hardship that Crohn’s lays on my family.

I am lucky enough have a husband that loves me through it all.  I am fortunate that he has never blamed me or fed my guilt.  My husband treats it like a goal to accomplish as a team.  He works longer hours and I find ways to work out the budget and arrange payment plans with the various medical facilities.  He wraps me up in his big ol’ man arms, lovingly calls it a ‘red month’, and assures me we will get through because that is what I need to hear.  And with scrimping, payment plans, and doing without, we do.  I just have huge guilt. 

So, there is my guilt.  I have shared it with you to expose yet another unspoken truth about IBD.  I don’t feel guilty all of the time nor do I let it consume me.  Never the less it is a very real part of my life.  It generally follows after I pay the bill for my very expensive medication, Ostomy supplies, family doctor, urgent care clinic, blood lab, gastro specialist or hospital bill.  It is a constant stream of money flowing out to pay the loan shark called Crohn’s.  I suppose if it were for college or music lessons, surfing lessons, or even a better working washer and dryer I wouldn’t feel so bad.  The mountain of financial guilt feels sharply infinite because we are spending our money to continually win against Crohn’s.  It feels like an uphill battle that we only chip away at to stay on the margins of healthiness.  I know I am worth it.  But I don’t like being worth it all the time or this much. 

Colonoscopy?!?

What is a colonoscopy? A colonoscopy is a procedure gastroenterologists use to determine the health of your intestinal tract. Specifically the colon. It is commonly used to check for ulcers, cancer, and damage caused by IBD or Crohn’s Disease.  In my case, we are trying to determine the best way to treat my more frequently recurrent Crohn’s Flares.

I have been expecting a call from my Gastro clinic to arrange for more testing. I am not good at waiting when it comes to finding answers to health questions. So I was excited to pick up the phone when I saw it was the clinic. It got interesting when I discovered they were trying to schedule for a Colonoscopy. 

See the pretty colon, rectum and anus in the picture?
Yep, I don’t have any of that.
Super impossible to do a colonoscopy on me.

Yes folks you read correctly.  COLONoscopy.  When I informed the nurse that I don’t have a colon or the anus/rectum needed for the test, the nurse decided to get off the phone with me to re confirm with my new Gastro Doc.

Hmmmmm.

Most certainly LESS excited now.

Crohn’s Pain ~The Deep End

 

It appears that my long season of wellness has ended.  Perhaps it is the cold and flu season or is it just my time.  No matter, the result is the same.  I am in a season of illness.  My Crohn’s is having a hay day and taking every excuse to flare.  And with that I share with you some of the events that I experienced over Christmas break.  I focus on the subject of pain because currently there is a campaign out there that states that IBD is all about going to the bathroom a lot.  To be true, for me at least, some of it is.  However, the majority of IBD Crohn’s is comprised of other experiences.  So I highlight one day for you here.

Pain  ~What a tiny little word.  Medicine tries to pin you down to a scale of one to ten.  But how can you when it is this:

The look on his face when he saw me this morning.  I knew I was not feeling well, but it got out of hand so quickly.  A cold, it was just a cold.  But then the vomiting and diarrhea started and my Crohn’s flared.    ”You look like a corpse.” His eyes searching mine, examining my face, his eyes filled with fear and concern. “You have dark eyes that are sunken in.  I have never seen you this sick.”

I see the pain and fear in my husband s guarded eyes.  Carefully crafted expressions holding up confidence and hiding his fear.  I know I am hurting him.  I can feel his compassion for me.  I have been too weak to get out of bed and don’t realize how sick I really am.  I have not slept well in over a week.  It has been nonstop vomit and diarrhea for four days.  My Ostomy output is violent as it fills the bag so quickly I can actually see the geyser of fluid as it changes the shape of my bag, filling it in one huge surge.  I am exhausted.  Loosing fluids faster than I can take it in.  I insist I am fine and promise to call if I need to go to the clinic.  “Are you sure?” Uncertain, my husband feeds our children then heads to work with a reminder about how fast he could be home if needed.

I lay in bed as long as I can.  I pretend I am well and read stories to my children.  They bring me their favorites and we read more until I cannot avoid getting up any longer.  I have to use the bathroom.  I am covered in sweat and the hair that I have pulled up into a pony tail smells of vomit.  I take a shower and it is exhausting.  I can’t stand through the process, but sit on the stall floor to rinse my hair.  At this point I know I am going to the hospital.  I can feel my heart pounding and it takes all my efforts to towel off.   The sudden cold seeps into me, making my joints ache as I shiver.  I am so weak and in pain I am unable to stand straight.  My daughter has noticed that I am not well.  So she doesn’t see my skeletal body, I ask her to please pick me out a cool shirt and grab the phone.  While she searches I am able to step out of the shower and make myself more decent.  I don’t want for her to see me this way.

My sweet husband comes home and sees with one look that I am in distress.  I am worse off now than when he left me.  With my children near I keep my discomfort to myself as best I can.  I would never want for my kids to blame themselves for something that the malicious Crohn’s has caused.  He calmly ushers our children to the car.  ‘Mama needs to go for a ride to the doctor and we are going to take her there.’  After securing them in safety seats he comes back and almost carries me down the stairs.  He is so gentle and careful as if I were breakable. 

Harsh hospital lights shine too brightly as I lie limp and weak on the gurney.  The ride here has taken its toll.  My hip bones press hardest against the coarse plastic loosely covered by a thin sheet. My boney knees ache, banging together as I struggle to find a more comfortable position.  Too emaciated to find purchase, the attempt sends a dizzying swell of the sound of my heart beat and the inhale and exhale of my own lungs through ringing ears at a high volume that muffles all other sounds.  I am stilled by the knowledge that I simply cannot.


Hot, sharp, piercing, twisted up agony steals my breath and quickens my heart.  Squeezing razor edged suffering.  Doubled over, gripping my abdomen, fighting off barbed wire misery so strong it’s nauseating. 

Vomiting is a body convulsing, shaking, frantic gripping, clammy, violent release of warm bile and blood.  Reflexive stomach muscles ache with over use.  Curled up around myself, sodden clothes with fever sweat, stringy hair and putrid breath. The smell of death wafts up in rancid vapor streams and nauseates anew, inspiring another accounting of my fetid contents.  Loosing vital fluids, spilling out my life into a cuffed, graduated bag to be measured and documented by analytical and distant nurses.  They can see how sick I am and are trying not to get attached because the depth of this pain will kill them too. 

Eyes sunken in from dehydration look upon my children with concentrated love.  I gaze memorizing their angel faces.  Warm pink cheeks, and wide, deep brown eyes, scared, vulnerable.  They see everything from innocent perspective.   My guilt whispers, ‘Your sickness is hurting them.  They will grow up and remember this.’  The oldest is fearful I will die.  I see it cross her face as she tries to be brave- like me, like her father.  Me, looking like hell, but trying to reassure her.  Raspy hoarse voice with earnest ‘I LOVE YOUs’ I pray my wee ones will remember.  I well up but refuse to join her tears.  Everyone is worried but putting on their best faces.  Sorrow eyes pretending cheerfulness; acting as if this is just a passing thing.  Saying it because that is what I need, hope, and will give all my energy toward.   The tears she is unable to hold back as my little family leaves me in the hospital for the night feel like a spike in the heart.  Right then I hate Crohn’s.  I do not belong here in the hospital when I should be home with my children.  Anger and injustice boil in me.  I want to chase down the hall to catch up so we can all go home together.  The IV in my arm and the inability to get out of bed is a cold reminder as the tears I had been holding back flow.

In truth my greatest fear is leaving them because of this wretched thief illness.  Crohn’s –  I feel I am living it right now. 

Horror.  Great and looming the idea of losing my life, my family, my children to Crohn’s.  Holding hands with death as lightly as I can, my Spirits head always turned away refusing to see.  Willing myself to embrace the suffering and stay.  But still I feel the possibility of death is here.  I got too sick this time.    Please pass me by.  Not today, please pass me by.  I can go breath by breath, endure and stay.   

When the fingertips of searing torture reach through my body pulling and pulsing until I am weak and hollow I feel scared.  I feel sad, weary and broken from a life rubbed raw with the cruelty of Crohn’s that scraped across it.  Humiliated and vulnerable with the nakedness of my sufferings exposure.  I won’t cry in front of them.  It would be too awful.  Like admitting my own defeat.

Today was an eight.

Gluten Free, Dairy Free & IBD Health

 

A while back I mentioned on my Facebook Page that I am new to the gluten free/ dairy free world.  Since then I have been getting messages asking about GF/DF and its success in curing, healing, and improving various forms of IBD.  So I thought I would answer here. 

In truth, I have no idea. 

I am not completely GF/DF.  My Son is. 

Why is my sweet little boy person GF/DF??  Autism.  As a mother I am doing everything in my power to help him.  That includes Gluten Free, Dairy Free, Soy Free, Casein Free and Food Dye Free.  I am not an expert on Autism, just a mom willing to try her best every day.  Right now this is what is working for our family.

I respect my Son, want to be a good example to him, and love sharing my snacks with him, so I stay GF/DF etc. in his presence.  As a stay at home mom that includes the majority of my day.  I still enjoy creamer in my coffee – but we all know only mamas drink that stuff!

I have discovered that Autism, like IBD, is an invisible disease.  He doesn’t LOOK Autistic.  But he struggles everyday just like we do with IBD.  It is also very individual.  Yes, my son has Autism but his symptoms and sensitivities are unique to him.  No two Autistic kids are alike.  Just as no two IBDers are alike.  Autism has stolen parts of him that our family is trying to recover.  Just as IBD has changed our lives and affects our families in their efforts to help, support, and understand us. 

So, I have absolutely NO idea if GF/DF helps with IBD.  But right now it sure is helping this CrohnieBolognas’ Son.

Hernia Hijacked

 

I have had my permanent ileostomy for about ten months now.  My surgery was ideal, my recovery time was speedy, my spirits high.  I was able to go back to life sooner than anyone expected, and have been relishing every bit since then.  I am active, happy and healthy.  Life could not be better.  I really love being a permanent ileostomate.

Recently I became very sick.  Sore throat turned into a sinus infection and bronchitis which included lots of coughing.  I ended up in the ER for a breathing treatment for my asthma and required lots of meds just to get back to normal. 

The hacking was particularly painful and frequent; invading my much needed sleep and interrupting my poor husband’s rest as well.  I am talking about the kind where your whole body curls over for leverage as you suck for breath and push for power.  In the past I have torn rib muscles from this sort of activity.  I remember the burning feeling of tearing muscles with each torturous eruption.

I was able to recognize the same rip and tear with this latest episode.  But it was in my abdomen, right next to my stoma.  I soon noticed a bulge and suspected a hernia.  Every time I cough, clear my throat, lift something up, bend forward, or do anything active, my bulge pokes out.  It is more than visual.  I can feel my bowel slide out and then back in.  *Insert diner scene from the movie Space Balls where the alien pops out of a gentleman’s abdomen.  ULK!*  The main concern is that my bowel may become strangulated. 

One further side effect is that the hernia has changed the shape of my stoma.  My once perfect little cherry life saver is now a frequently changing mini island.  Sometimes it is concave making great opportunity for stool to find its way under the wafer, or it is protrusive on the bottom and tucked in on the top looking a lot like a child pouting with his bottom lip stuck out. 

A visit to my GI surgeon confirmed a hernia and damaged stoma as we discovered the extent of the damage.  The understanding is when I went in for surgery ten months ago, my bowel was very swollen.  The opening to make the stoma had to be big enough to fit inflamed bowel.  However, now that the swelling has gone down, coughing opened up the muscle wall allowing normal size bowel to move out and in freely.  I will need surgery to fix the hernia and do a stoma revision. 

Who would guess that a cold would lead to this? 

Some moments I am grumpy about it.  Let’s face it, this stinks! 

But then I think of ways to be okay with it.  My surgery will be in the summer so I will not interrupt school for my daughter.  I heal better in the summer.  I already know what to expect from surgery. 

So I got hijacked by a hernia.  Hey!  Perhaps I’ll get some good pics 😀